Connect with others who understand.

Sign up Log in
Resources
About MyAmyloidosisTeam
Powered By
Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Cardiac Hereditary Amyloidosis

A MyAmyloidosisTeam Member asked a question 💭
Northern VA

Who has cATTR? How long since diagnosis? What are your symptoms? what meds have you taken and/or are taking? If you are on onpattro what has it done for you?

August 10, 2022
•
View reactions
A MyAmyloidosisTeam Member

You should apply for Pfizer financial aid for Vyndamax. Vyndalink.com is their website.
Medicare Part D will cover a portion of the $20,513 retail cost per 30 day supply. You have to meet a Catastrophic amount of out-of-pocket drug costs which in 2022 is $7,050. Then you pay 5% of retail drug cost. $1,025.66 per month. Not even close to affordable for most people. Apply to Pfizer with help of your doctor.

August 11, 2022 (edited)
A MyAmyloidosisTeam Member

Hereditary amyloidosis, also known as familial amyloidosis, is an inherited disorder that often affects the heart, kidneys, and nerves. This form of amyloidosis is a protein misfolding disorder where the liver produces the transthyretin (TTR) protein, which helps carry vitamin A and thyroid hormones through the blood. When Show Full Answer

Hereditary amyloidosis, also known as familial amyloidosis, is an inherited disorder that often affects the heart, kidneys, and nerves. This form of amyloidosis is a protein misfolding disorder where the liver produces the transthyretin (TTR) protein, which helps carry vitamin A and thyroid hormones through the blood. When the TTR protein misfolds, it becomes abnormal and can lead to serious health issues.

Key Points:
- Hereditary Amyloidosis: Inherited disorder affecting heart, kidneys, and nerves.
- Protein Misfolding: TTR protein misfolds and becomes abnormal.
- Organ Impact: Commonly affects the heart, leading to cardiac amyloidosis.

Symptoms of Cardiac Amyloidosis:
- Shortness of breath
- Heart palpitations
- Arrhythmias (abnormal heartbeats)
- Heart failure

Types of Hereditary Amyloidosis:
- Hereditary ATTR (hATTR): Caused by misfolded transthyretin protein.
- Wild-Type ATTR: Also known as senile amyloidosis, typically affects men over 65.

Treatment:
- Early detection and diagnosis are crucial.
- Treatment options include medications and stem cell transplantation to manage symptoms and slow disease progression.

For more detailed information, you can refer to the resources provided in the knowledge base.

July 30
A MyAmyloidosisTeam Member

My cost is $65.00 per month. It was difficult to get approved. I only have Medicare part A, my primary is Blue Cross , Blue Shield under my deceased husband retirement plan. Keep trying working with your Doctors and Pfizer for the financial aid. I'm on Vyndamax now. Good luck keeping you in my prayers. I dont believe the pharmaceutical companies realize how this is a mandatory drug
for people like us. Good Luck.

August 14, 2022
A MyAmyloidosisTeam Member

Beverly and Daniel, you are welcome!

August 14, 2022
A MyAmyloidosisTeam Member

Thank you. Costs are impossible for me!

August 13, 2022

Related content

View All

I Have Very Severe Poly Neuropathy What Can I Do? I Have To Use A Walker Nerve Damage Re EMG. Sudden Severe Pain Back Of Legs

A MyAmyloidosisTeam Member asked a question 💭
Fresno, CA

I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?

A MyAmyloidosisTeam Member asked a question 💭
Yuma, AZ

Does Anyone With Familial ATTR Have Both Liver And Cardiac Involvement? What Has Been Your Treatment Protocol, Progression ? Thank You!

A MyAmyloidosisTeam Member asked a question 💭
Philadelphia Area, PA
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in